Meet the next specialist

So, today was Katie’s appointment with the neurosurgeon.

I was expecting a pretty basic meet-n-greet. This is a Baclofen pump, this is how we place it, etc etc. Let’s get this on the schedule quick and move on to the big surgery, which is already scheduled for October.


We spent a good 45 minutes with this doctor. She seemed a little preoccupied with Katie’s diagnosis. 1. Agenesis of the corpus callosum. 2. Cerebral palsy. 3. Dystonia. These all kind of flow together, right?

Well… sort of. Not exactly. Actually, many people with agenesis of the corpus callosum are walking and talking. Some of them don’t even know they are missing this part of their brain. Sometimes this is an incidental finding when someone needs a brain MRI for some other reason.

Of course, this is a spectrum that affects people differently. I know several other kids with ACC. Some of them walk, some of them don’t. Some of them talk, some of them don’t.

Anyway, this doctor (who is Harvard trained, and has a seriously impressive CV) was a little concerned that something might be getting missed.

We haven’t had much luck with oral meds or Botox to help Katie’s muscle tone. So, the Baclofen pump might not work. This means the Baclofen trial, where they give her the drug by epidural to see how she responds to it, is back on the table.

She also wants a spinal MRI (which the orthopedic surgeon hadn’t mentioned to date. Great, let’s take my confidence in him down a notch.), and a ‘quick’ brain MRI. She is wondering whether Katie might have a tethered cord. This is a structural anomaly at the bottom portion of the spinal cord, and can have an impact on the lower part of the body. It is usually pretty fixable with surgery.

So, we agreed to go ahead and do the trial and do the MRI – hopefully together. Then we moved on to the next appointment.

Doctor B (appointment #2 for the afternoon) had talked with Doctor A. She had intended that we would skip the trial portion, so she was backpedalling a little. Doc A was hoping we could administer the trial dose while she was still under the anesthesia from the MRI. Doc B says this won’t work, as we won’t know what result comes from the anesthesia and what comes from the drug. Also, to do a single dose trial, she would need for Katie to be cooperative and to hold still for a lumbar puncture. (Oh, did you hear me laughing hysterically? The rest of Minneapolis did.)

So, now we need to schedule a MRI. We need to schedule a drug trial that sounds like it could be 2-3 days in the hospital. I still have no confidence in this trial, because Katie hates (HATES!) all things medical, and sitting in a hospital is guaranteed to result in a very grumpy kid. Also, with the epidural, she won’t be able to be in her chair, which is one of the things that is currently a challenge, and where we’re hoping to gain some relief.

Then I asked the million dollar question. If oral meds don’t work, and Botox doesn’t work, and the Baclofen pump isn’t a good option… what do we do about her muscle tone?

Doctor B had to pause at this point. Her first response was pretty telling, though.

“I would refer you back to a neurologist at that point, to see if there’s anything they could do.”

Translation: there isn’t anything more I can do.

But she was still chewing on it. She wanted something to give me, clearly.

“There is deep brain stimulation.” She looked thoughtful. “We do have a doctor here who does that. It usually works best for people who have primary dystonia from a genetic defect, but it might be an option.”

Did you just hear me sigh? The rest of Minneapolis did.

So, the doctors are going to have a confab about my little sweetheart. Doctor A and Doctor B have both promised to get back to me by the end of next week. Not what I expected or what I was hoping for on this trip.

And now, I have something new to research. Which means I won’t be sleeping any time soon.

Goodnight, all.

I won! I won!

What’s your kid’s least favorite thing? Katie’s least favorite thing is her braces for her feet.

Katie's AFOs
Katie’s AFOs

Scratch that. Her least favorite thing is getting casted for the braces for her feet. She has expressed herself so thoroughly on this fact that I think she may have actually caused some orthotists to leave the profession.

Regardless, we need them. Because Katie has good range of motion in her feet (and because she really, really hates them) we only wear them for standing exercises.

I haven’t been doing much of that this summer. Normally, Katie goes to summer school, so she would wear them then. This year I decided we should have a real summer, and I barely put her in them at all. Getting her into a stander or gait trainer has become a real challenge for me physically, so we mostly let them gather dust. Katie doesn’t mind.

Yes, yes. My bad.

A few weeks ago, I was doing some cleaning, and I noticed one of the inserts for her AFOs (ankle foot orthotics) was missing. Her braces work in two parts – there’s a hard outer shell, that protects and gives structure to her ankle and foot. Then there’s a silicone sleeve (sock?) that protects her skin from the hard outer shell. One of the sleeve/sock things was not with the rest of the stuff.

Silicone sleeve to keep the brace from hurting Kate's skin.
Silicone sleeve to keep the brace from hurting Kate’s skin.

My three year is fascinated by Katie’s orthotics (like everything else of Kate’s), and occasionally she gets hold of the braces and tries to wear them. (Yes, once again, my bad.) My first thought was that perhaps my littlest had taken off with it.

After a thorough tossing of the girls’ toy boxes, dressers, beds, and closets, I came up empty.

Well, crap.

So, school is about to start in a couple of weeks. I have three fourths of Katie’s AFOs. What to do?

I stewed on it for a few days, sure that the stupid thing would turn up. Nope. So, I swallowed my pride and called the clinic. I was routed to Mark, one of three orthotists.

Mark checked on when the last casting was done, and said the company might still have it. He checked and called me back within about fifteen minutes. No problem. Yay!!! I was really starting to sweat that I might need to buy a whole additional set of hateful AFOs over this.

The company did still have the impression of Katie’s foot, and Mark said it would only take about a week to get it.

So, I walked around for a few days with a little boost of having something gone my way.

A week went by.

Another week went by.

I tend to lose track of things that aren’t right in front of me, demanding my attention (read: mommy syndrome). I suddenly realized school was about to start, and I hadn’t heard back from Mark.

Okay, time to get annoying. So I called the clinic. I asked for Mark, in orthotics. “Which Mark in orthotics?”

Umm… what? You only have three orthotists, and two of them are named Mark? Are you kidding me? Come on, at least give one of them a nickname or something!

They routed me to one of the Marks, and I left a voicemail. The next day, noone called me back. Of course, I didn’t realize this until 5:05…

The following day, I called again. “Which Mark?”

“Heck if I know. I think it was the one with the curly hair, but I just talked to him on the phone.”

That caused a pregnant little silence. Then I was shunted off to a voicemail again.

The next day, after explaining again, I was routed to a medical supply person(s voicemail).

On Friday afternoon, I realized (again – remember the mommy syndrome thing) that this stupid issue still wasn’t resolved, and the first day of school was Monday. So, I called again, and pled with the receptionist.

She got the nurse to call back, who figured out that the stupid little silicone sleeve/sock thing was actually there. Did we want to come and pick it up, or just wait and get it during our appointment later next week?

Um, yeah – now, please!

So, at 4:15 on Friday, I loaded up my ten year old and my three year old. We got there in five minutes.They took about five minutes to confirm that the new one did fit Kate’s foot, and we were off!

So, this morning Katie went off to her first day of fifth grade with all of her accessories in place.

We’ll see if they all make it home.

Random monkey.
Random monkey.

There and back again

A few months ago, I decided to get a slightly different access port for Katie’s tummy. She had the MIC-key. We switched to the MINI-One. Our local hospital system put us through a few hoops to do it.

The new button is a little smaller than the old one, which is why I wanted it. Katie wears a body brace, and having a button sticking out of her tummy can be a real pain. The new button is also a little smaller in diameter, which I wasn’t expecting. This means it clogs easier. Also, Katie’s stoma (the hole the surgeons made to gain direct access to her tummy) was a little big for the new button.

When Katie got her first button, we were warned that it’s very important to keep it in place at all times (like we’d take it out for the fun of it.). We were told that, if her button came out, that stoma could start to close itself in a matter of hours.


Three months (or so – not looking back at dates right now) later, and the new button still fits a little loosely. That means that I either need to put gauze or some other absorbent material around Katie’s button before I give her a feed (which I basically never remember to do), or she winds up with a soggy tummy (shirt, skin, etc.). So, apparently her stoma isn’t going to close up in an instant if her button fails.

I told my husband the other night, ‘I’m thinking about going back to the MIC-key.’.
‘Why?’ He asks.
‘Well, this one is still loose. It’s a little harder to get the extension seated. And it really isn’t that much different. So, we might as well go with the one that didn’t clog every time she gets her Prevacid.’

Okay, so that was settled. Easy enough, right?

Well, no.

Yesterday morning, I decided to change out her button. I try to change it on a schedule anyway – after the first one surprised me by breaking after only six months (read: earlier freak out warning). So, I got all my supplies ready. New button (old style), little syringe ready to fill it, empty syringe to empty the old button for removal,a little Vaseline for the new button, a washcloth. Yada Yada.

I took out the old button. Easy enough. I went to put in the new (old style) button. Hmm – not so easy! And Kate yelled at me. So I tried again – sometimes you have push a bit to get things right. Nope. Apparently, while her stoma hadn’t shrunk enough to seal things up, it had shrunk to the point the old buttons won’t fit anymore.


Fortunately, I did have a replacement MINI, so I went for that.

Turns out, those aren’t that easy to place, either. I prepped it like I always do, and went to put it through her stoma.

Hmm. Bendy. The stalk is so slim, it just wanted to bend to the side instead of going straight through. I could make an x-rated comparison here, but that’s all I’m saying.

It took a few tries, and eventually I had to just grab it up close to the tummy side. We got it placed, but Katie was Not Happy.

So, we’re sticking with the new button. While there was no good reason for the hospital to make us see a surgeon to get the new one, that’s exactly what we would have to do to make her stoma bigger again. Therefore I changed my mind (again). The new button is freaking awesome.

As I went to throw away the copious amounts of packaging, I found what looked like a little golf tee in the MINI’s case. Huh.

So, I dug out the instructions (you get a book with each new button, along with a cubic foot of packaging). Interesting… it turns out that some people have a hard time placing these buttons, because they are kind of squishy. So, the manufacturer includes this little golf tee thing to put in the button and stiffen it for placement. Then you can take the golf tee back out, and you’re good to go.

My bad. I guess I should have read the directions.

The MINI-One placement tee. They did not use one of these in the surgeon's office.
The MINI-One placement tee. They did not use one of these in the surgeon’s office.